Pain

I've been in a lot of pain the last few days.  I'm pretty sure kidney stones have reared their ugly heads once again because of where the pain is.  Several years ago I had lithotripsy done twice, but of course, the stones still remain.  I can't have the lithotripsy done anymore because I can't have the anesthesia, unfortunately.  All I can do is drink lots of water and lemonade (lemons help break up whatever mine are made out of), carefully monitor the pain, and pray that there are no complications.  The pain comes and goes, so I'm not worried about there being a bigger problem, but it just becomes annoying.

I've also been nauseous a lot more lately.  Jake and Kati are convinced it's my blood pressure meds.  (Although, it could be partly from the kidney stone pain too.)  I'll monitor that more in the next week or so and if it doesn't get better I'll call my endocrine docs and see if there's anything they can do about it.  Until then...I just eat what I can, when I can.

Unfortunately, not being able to eat much lately means I've also lost some weight.  Kati and Eric said several times they thought I'd lost weight, but I thought I was still okay.  Yesterday, though, I weighed myself and I've lost about 6 pounds, so...ya.  Once again, I'll just eat whatever I can, when I can.  

Hopefully, all this stuff will clear up enough so I'm not miserable when there are Christmas gatherings.  Not to mention that my cousin, Ryan, and his wife, Logan, are going to be here before New Year's and for about a week after.  Ryan is in the Navy and stationed in Connecticut.  They're expecting their first baby in April so we're having a baby shower for them while they're here.  Ryan (and now Logan too) has always had a special place in my heart so I'm really looking forward to seeing them and seeing little Lyle in-utero :)  So I need to be feeling decently when they get here!!

Thanks for praying!

It's been almost 3 weeks since I've blogged.  Not sure why exactly, but I just haven't been all that talkative.  Plenty has happened, though, so I'll try to catch you up.

On November 25th I turned 27.  I love my birthday.  Almost in a child-like way, I love my birthday.  I think part of it has to do with the fact that my parents were told that I wouldn't live to be 1, and here I am 26 years later still proving them wrong.  I like proving them wrong :)

Jake added to my all-things-game-related addiction and got me the official Scrabble Dictionary.  I then kicked his butt in 3 or 4 games in the next few days.  He also took me out to Buffalo Wild Wings to eat dinner and play trivia...one of my FAVORITE activities :)  

My 16 month old niece, with some help from her mommy (my sister, Staci) called to sing me happy birthday.  It was priceless!  It made me cry, but in a good way, of course.  If you're on Facebook, you can hear the message on my page.  All in all, a great birthday.

Thanksgiving was a lot of fun.  My brother (Matt), sister-in-law (Chris), niece (Mahkayla) and Aunt Nancy came to the house for lunch and afterwards we played Mega-Monopoly.  Such a great game!  Chris and Mahkayla ended up calling it a draw after about 5 hours of playing and bankrupting the rest of us.  We all had a lot of fun and laughed a lot...such great family time.

The next Saturday Jake and I went out with our best friends, Kati and Eric, to see the movie "Fireproof" at Wehrenberg Theaters.  We'd already seen it once, but it's such a great movie we wanted to see it again.  This was also further celebration of my birthday (which actually turned into a birth-week instead of day).

Unfortunately, on Saturday night I was already starting to feel kinda icky.  By Sunday I was feeling really badly and had a full blown cold (and a GI bug to be named later).  We ended up missing our godson (Kati and Eric's son), Malaki's, first birthday party, and were really bummed about that.  But by Sunday night, Jake was sick too, so we were very glad we didn't go.  Jake ended up staying home Monday and Tuesday, and tried to go into work on Wednesday, but came home after only a few hours.  Thursday, we were feeling good enough that he went back to work, and I did payroll.  We're still feeling the effects, but the Puffs consumption has gone down dramatically.

Friday night we had our annual Franmar Christmas party.  We always love going to the party.  For me, it's a time to put faces to the names I write checks for every week, and to see the ones I  know but don't get to see very often.  It's a fun group of people to hang out with, so the party is always a good time.

Here's Jake and me at the party:

This year the entire company surprised me with a new game...Franmaropoly!  They spent the entire last year creating this thing.  From writing new Chance and Community Chest cards to all the employees HAND-MAKING the playing tokens.  They had a local printing shop we do business with print the cover for the box lid and the board itself.  It's absolutely incredible.  I am completely blown away that they would do this for me.  I'm still in shock that I held back the tears (you know how emotional I am!) while at the party, but there were plenty when we got home.  Now I just have to get Jake to play it with me :)  (I'll add photos as soon as I have some!)

I guess that's it for now!

Therapy, Pooping, and a Big Decision

I've been home for about a week and a half now and for the most part things have gone well.  Jake has been doing my CPT every night, which has helped a lot.  I'm not good at doing my CPT at home because it usually includes using "The Vest" which is pretty uncomfortable.  The Vest inflates and then shakes the stuff loose in the lungs.  It's just overall uncomfortable when I'm doing it and then I itch like crazy when I'm done.  I think that just has to do with the friction it causes, but still.  I finally asked Jake if he would be willing to do manual CPT and he reminded me that several years ago he pushed pretty hard to do it for me and I, uhm, well, not so politely said no.  I can be really stubborn when I want to be.  Needless to say, he was just short of thrilled when I asked him to do it for me.  

I think manual does a much better job than the vest.  The vest was designed to give CFers more independence and there are also a couple of other things I can use (percussors, Flutter, Acapella) but I don't really like any of them.  I much prefer manual CPT.  CPT involves him pounding on my back, sides, and chest while in different positions for 3-5 minutes at a time.  This is also called "postural drainage".  Depending on whether we're doing "uppers" or "lowers" I sit or lay in different positions in order to get the mucus to drain in the right direction.  It may sound painful, but really, when I get it done in the hospital I can end up falling asleep.  Right now we're doing 3 minutes a side and will work up to the full 5 minutes.  There is quite a bit of technique involved and the muscles really have to be built up.  Jake is doing an awesome job.  He has good technique so he gets a good "popping" sound (a sign of good technique).  I'm glad I finally have a better attitude about the things I need to do...it makes me feel better all around.

Today was a little tougher.  (This is one of those delicate subjects that I hope I won't gross anybody out with...I'll be careful of what I actually write, but you'll get the idea.  If I still gross you out, I apologize! :-D)  Back in January I had an intestinal blockage that made me spend an extra 3 days in the hospital.  I was in so much pain and was so bloated you would have sworn I was pregnant and in labor.  For 3 days I drank some pretty nasty-tasting liquids (to get things moving), MiraLax out the whazoo, I wasn't allowed to eat anything and had enemas 3 times a day.  If things hadn't started moving, surgery was the next step.  I apparently have a shrinking of the intestine right before the colon (they found this in a CT scan) so that can cause stuff to get backed up.  I tell ya, I have never been so happy to poot and poop in my life!  

Anyway, I have recurrences of this every once in awhile, but since I know the signs I can act pretty fast.  Today, though, it snuck up on me.  After breakfast I was so full that I knew I already had a problem.  I drank a glass of milk with MiraLax and then went back to sleep for a couple of hours.  My stomach wasn't nearly as distended when I woke up and I felt better so I ate some Jell-O.  I guess I wasn't better, because even with that little of food in me I was incredibly full again.  So, I've been pretty uncomfortable all day.  I haven't eaten anything since the Jell-O and am a little nervous to do so.  I guess when I'm done with this I'll drink another glass of MiraLax and then try to eat a little something, because I am SOOO hungry.  Hopefully, things will get moving again!

Jake and I made a fairly big decision this past week.  We've decided that after the first of the year, Jake is going to cut his hours at work down to 15 hours a week.  We want to spend a lot more time together, not to mention Jake will then be able to help me out a lot more at home.  We don't want to waste the time we have together.  If the next few years really are all we have left, then we want to make sure we're making the most of every moment.  Jake will still be going to school, but we will have a lot more time together than we do now...which is very little.  Since making this decision, Jake has had so much peace about it.  He really wrestled with it for awhile but he decided that this was the right decision.  We always have fear about what other people will think about our decisions (it's a sickness, I tell ya) but after deciding this was the right thing for us in our situation, we've had nothing but positive feedback.  Our dearest and closest friends, Kati and Eric, even told us that they've been praying that we would do this!  Mom and dad have been awesome.  They know that this means we're staying put for the foreseeable future, but they've made it clear that they want this for us too and are happy to have us stay.  We are so incredibly blessed by parents and friends who love us both so much, are willing to help us in any way they can, and continually support us.

I have never lost hope in healing or a cure or significant medical breakthrough, but Jake and I really had to look at what the possibilities are and what my doctors and history tells us will happen.  We are really looking forward to our time together and the memories we can make that, no matter what, will never be taken away.

Thinking and Praying

Jake and I have been talking about the transplant.  We've been praying about it.  I know others are praying for us.  I keep having the same thoughts and feelings about it.  The trouble is, my answer doesn't make sense.  More than anything, I want to do God's will and not my own.  I want to take the right path, but sometimes God's path doesn't follow what we see as logic.  Not to mention if I go through with what I've been feeling I need to do, it kind of scares me.  Not that it's bad, but just uncomfortable.

Since confusion does not come from God, I know that I've been getting in the way.  Tonight, I went to the first chapter of Joshua and read this:

"Be strong and very courageous.  Be careful to obey all the law my servant Moses gave you; do not turn from it to the right or to the left, that you may be successful wherever you go.  Do not let this Book of the Law depart from your mouth; meditate on it day and night, so that you may be careful to do everything written in it.  Then you will be prosperous and successful.  Have I not commanded you?  Be strong and courageous.  Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go."

Though I won't be sharing what has been going through my head right now, I was really encouraged by these verses.  I'm going to continue to pray and I hope that whoever reads this will pray with me too.

Discharge Day!

I'm just finishing up my last antibiotic right now.  Jake is on his way up and should be here in about an hour, so as soon as this med is done I will de-access my port and pack up all my stuff.  I don't think I've written about my port, so maybe I should explain that.  It's a small Rolo (the candy) looking thing that is surgically placed right under the skin.  Mine is in my chest (although there are numerous other places to place them).  There is a tube connected to it that runs up my neck and then down into my heart...well not quite my heart.  Each time I come in the hospital they insert a special needle (a "huber" needle) into it and I get my antibiotics through that.  While I'm here I get the needle and dressing changed once a week, and at home I get it flushed every month.  It's really nice because of the aforementioned limited number of viable veins.  Plus, blood can also be drawn from it.  My Tob levels can't be drawn from it, though, because that's where the antibiotic goes in, so the results would not be accurate.  They have an average lifespan of 5 years before they need to be replaced, but I and a few other CFers have pretty much crushed that statistic.  I got mine in April of 1997 and it's still going strong.  Usually, they need to be replaced because they stop flushing caused by clotting or because they get infected.  I have it flushed every month to help prevent the clotting.  I use heparin to flush it while in the hospital (while it's not being used for meds) and a more concentrated dose of heparin each month while I'm at home.  So, that's pretty much that.

My med is done now, so I'm gonna go take out my needle and get packed!  My next blog will be from home! Woohoo!!!

Breakin' Out

I get to go home tomorrow!  I'm pretty excited about that :)  Saturday will be 2 weeks so Dr. Hornick is letting me out tomorrow.  Studies have shown that hospitalizations lose their effectiveness after 2 weeks and can actually do more harm than good.  Being on antibiotics long term, without a break, can lead to decreased sensitivity.  I have resistance to most drugs, and a lot of the ones I'm not resistant to I'm allergic to, so I certainly don't need any help with that.

I got blood drawn again today, and again, it only took 1 stick.  I'm completely shocked by that.  The entire time I've been here I've only had to be stuck the number of times I've needed blood drawn.  That's pretty crazy.  A very good crazy though.  A kinda of crazy I would like to be repeated over and over and over and...you get the idea :)

I've had a whole different attitude toward taking care of myself for the last couple of months, and it's only improved since I've been here.  Suddenly taking care of the diabetes isn't such a chore, and I actually don't mind (I haven't made it to "like" yet) exercising.  It's been somewhat enjoyable since I've been here.  I've made progress and I feel better physically and emotionally.  I'm trying to figure out what to do for exercise when I get home.  We have a Wii now, so that will definitely help.  I'm looking at a couple of options, but I'm not sure what we'll be able to do.  Whatever happens though, I really think God is changing my mind and my attitude.  I've prayed for that for years and now it's happening.  Very cool.

I got a really happy surprise today.  I found out that the new PT aid, Kelly, is a Christian too!  I'd suspected it since I met her about a week ago, and apparently she had suspected me too :)  Today she asked me and after I told her I  was, we had a great conversation!  It is really nice to be able to talk to her while she's doing my CPT.  She is a very cheerful person and always has a smile on her face.

Today also seemed to be Pick-on-Becky-Day.  It was all in good fun, but it seemed that everyone who came in had something to tease me about.  I've thought for a long time that I must have a sign on my forehead I can't see that says "You can pick on me and I'll take it well".  I actually like it a lot.  The one I remember most is when we were coming back from Las Vegas.  We were on a flight that served us these little boxed lunches that included Jelly Belly's...one of my all time favorite treats.  I got really excited about it and the steward said "Oh ma'am, I'll have to take those".  I got a shocked, sad look on my face and then he laughed and said "I'm just kidding!".  He (and Jake) got a good laugh out of that.  I love that people, even strangers, know they can joke with me like that.

If you know me, you know that I LOVE games, no matter what the game is.  Board games, card games, video games...I love them all.  So, the hospital has a Bingo night that I've always loved to go to.  I guess they realized that people had a hard time getting to the room where they had it so they started TV Bingo.  They have a closed-circuit TV station here at the hospital that they now use for that every two weeks!  It's pretty fun.  You turn the TV to channel 5 at 6:00pm and play.  Earlier in the day they come around and ask everyone if they want to play and give them a Bingo card.  When you get Bingo you call BINGO (2-4646) on the phone and they answer it on the show.  We play 4 games and there are 2 winners for every game.  When all the games are over, the volunteers bring around a cart of prizes that each can pick from. (They're good prizes too!)  Well, last night I was the second winner of the last game!  I chose a green shawl that I'm quite sure my "Aunt" Vicki is going to try to steal. :-P  It was a really nice diversion for awhile!

Anyways, I'll be home by tomorrow night and be ready to visit with the Stubbs family while Jake's sister, Selena, and her husband, Brian, and their 2 1/2 year old daughter, Norah, are down for the weekend.  I always look forward to seeing them and am especially excited to see Selena, who is at the moment very pregnant.  She is due at the end of December, so this will be the last time we see them before the baby is born.  I'm getting home just in time to see them and have some really good food.  Pretty good timing, I think :)

Apologies

For all of you who have commented to me on this blog, I am so sorry!  I thought blogspot would notify me somehow if I had comments, but it didn't so I never saw them until tonight!  I so appreciate all of your comments, prayers, and love...I hope you know how much they mean to me.  And from now on, I will check to see if I have comments so I can write back!

Thanks again!!

P.S. After writing this I found where to change settings so that I do get notified when I get comments :)

My "Free" Day

Not much to share today.  Wednesdays are the "free" days.  No tests at all...just exercise.  It went really well again today.  I'm kinda kicking butt and that always pumps me up :)  

I'm feeling better today although I'm quite tired again.  I got woken up at about 3am by someone taking the other bed out of my room.  I have no idea why they needed it or why they needed it at 3am.  Oh well.  Then I got woken up at 7:30am to do nebs to be ready for CPT.  Usually I don't get woken up until 8 or 8:30, so with all that I'm pretty tired.  

I'm not having the pain in my side anymore and getting up to do things isn't as tough.  So it's my theory that a lot of people prayed about that and so now it's gone :-D  I don't know what Dr. Hornick will think.  I haven't seen him yet today.  He may have come when I was gone, I don't know.  I'm not really worried about anything though.  

I did see the endocrinologist (not Dr. Doelle, but someone else I've never met) and he commented on how well I was documenting my blood sugars and insulin.  I about started laughing.  If he only knew.  I also talked to the dietician today about carbs.  She gave me a booklet thing that should help me some more.  I'm actually finding out that a lot more of what the doctors and nurses told me when I first became diabetic stuck than I thought.  I'm a lot better at estimating carbs than I thought I was.  That's building my confidence a bit more :)

I didn't post this yesterday, but I had a visitor!  Very exciting for me!  My friend, Heather Fey, was in Iowa visiting her aunt and uncle, so she stopped by!  Her uncle works at the hospital so he was able to find me for her.  That comes in pretty handy because this place can be pretty confusing if you're not used to it.  We only got to talk for about 10 minutes before they came to get me for the x-ray, but that really brightened up my week.  Heather and her husband, Paul, are in our small group Bible study at church.  They are great friends and are one of the most encouraging couples we've ever met.  We love hanging out with them and I am really looking forward to getting back to our small group when I get home.

'til later...

A Good Day Overall

I've been having some low Sats lately and some pain in my side so Dr. Hornick ordered a chest x-ray today.  He's pretty sure it's just a muscular thing, but he wanted to double check.  Thankfully, x-rays aren't painful, so I'm good with that.  I'm not sure when I'll get the results from that, but again, if I don't hear anything I know it's okay.

The last few days I've had a hard time breathing when I get up to do anything and had really bad headaches from the low oxygen levels.  Hornick said that I may need to start using more oxygen at times when I didn't used to need it.  That's pretty frustrating to me, but I'm always hopeful that things will get better.  He also said that he's always been surprised with how high my Sats have been given how low my PFTs are.  I think that's kinda cool.  

I also did PFTs today.  They were 31%.  The number we look at, called FEV1, is the amount of air that can be blown out in the first second after deep breath.  Mine is something like .84 liters, which is 31% of what is predicted for my height, weight, etc.  That's not too bad considering how bad I was when I came in, but they're not even close to where I want them.  But really, I want to be back at 85% so...

I kicked some major butt at exercise today.  My Sats stayed high the whole time (on 2 liters of oxygen, of course) and my work load was higher than it's been in awhile.  Amanda gave me a challenge and I couldn't resist.  Turns out I did pretty well!

So, something that's running through my mind...

I'm rethinking the transplant.  Two years ago I made the decision to not get one, but for about the last year I've been continually questioning that decision.  I think it was the right decision at the time for multiple reasons, but now I think I need to look at it all again.  I'm sure I'll be talking about this more in future blogs, but for now I just want to ask that you pray for me and for Jake while I make this decision.  Doing this would mean major life changes, the least of which would be moving for probably 6 months or more.

Thank you so much for allowing me to talk about all this.  I really think this has been good for me and allowed me to open up about a lot of things I probably wouldn't talk about in person unless specifically asked.  I'm very open about my disease but I find it very hard to open up about how it affects me emotionally and so this gives me a good outlet for that.  I also very much appreciate your prayers.  It is only because of Jesus that I am here.  He's the only thing that gives me hope and a purpose for my life in the midst of so much disease and pain.  I am continually grateful that there are people who lift me up to Him in prayer and though I will never understand it, God chooses to move when His people pray, so...thank you for all you do for me.

Randomness

Jake and mom came up for the weekend.  Dad is on Colorado on his annual Elk Chasing, er, Hunting trip so he obviously wasn't here.  (He called me today and said he actually got a shot off this year, so he is now officially a hunter.)  We didn't do a whole lot.  My med schedule is such that it doesn't allow for a lot of time out.  We went out to eat on Saturday and Sunday and saw a movie on Saturday night.  "Changeling" was a good movie.  It was a tough movie to watch, but a good one.  My favorite part of the week while I'm here is the weekends.  I get visitors, get out of the hospital, and get away from hospital food.  It's not all bad food, but it does get boring after awhile.  We did a little shopping on Sunday too, but before I knew it it was time to be back for my next med.  I'm pretty tired now...too much excitement :)

I got my Tob trough today and haven't heard anything about it, so I'm assuming it was okay.  Tomorrow I'll finally do a PFT (Pulmonary Function Test).  We always have them on Tuesdays and Fridays but Dr. Hornick lets me decide if I want to do them or not.  I was feeling pretty crappy last week so I didn't do them at all.  I'm anxious to see what they look like, though, so I'll do them tomorrow.

So far I haven't had any side effects from the new med.  I'm supposed to watch for dizziness, especially when I stand up, but I haven't noticed it at all, so that's good.  Over the weekend I finally started feeling better.  It took longer this time to actually start feeling the progress.  My hope is that it will continue.  I'm still coughing but not like last week.  I got up a lot of junk today and it was easier to get up, so I think that's good.  Exercise was tough today, but I think this was just a bad day for me.

I guess that's it for now.  Sorry it's all kind of random...I really need a nap. :)

It Started Off Happy...

Ironically, I got some sleep last night but am more tired today than I've been all week.  So weird.  I guess I'm not all that talkative because of it, so this will probably be pretty short.

There are 15 CFers in right now, so things are a little hectic around here.  The PT people have to work out how to do all 15 CFer's CPT twice by 12:00pm.  Not an easy task.  Then they have to get us all in to exercise between 2:30pm and 4:00pm.  Again, not an easy task.  But they get it done and we are all the better for it.

I wrote the first paragraph and my endocrine fellow (a doctor who is in process of getting their specialty) came in and gave me some news.  They took a urine test the other day and there are proteins in my urine, which is called nephropathy.  This means that there is at least some kidney damage.  The good news is that it is early and is treatable.  I will now be taking a blood pressure medication in order to correct the problem.  This brings on more regular tests and concerns, but it is treatable, so that is good.  The bad news is that it is my fault.  For more than 12 years I did not take care of my diabetes.  It took a backseat to my CF and because of my stubbornness and lack of discipline I have now created a whole new issue.  I'm crying now because I feel so stupid for not taking care of myself.  There is/was this part of me, that despite having CF, has been in denial of the significance of the diabetes and the fact that I could develop other issues.  Maybe it's just too much for my brain to handle.  I joke a lot about how many health issues I have, but it's always, at least initially, a shock to hear that there is yet another problem.  I know that eventually I will add this to my list of complications and diseases and will move on with the taking care of myself.  Right now, though, I am still processing.  If you could pray that I process well and that the treatment will be successful without side effects, I would greatly appreciate it.

Until later...

Emotions

One of the CFers, Destiny, gave birth to her baby boy today.  They both are doing really well, but this stirred up a lot of emotions in me that I wasn't expecting.

You all probably know that before we got married Jake and I decided to not have children, and to further ensure this I had my tubes tied.  What you may not know are all the reasons why we made this decision.  CFers can have children and Dr. Hornick even called me before I had the surgery to make sure that I knew that this wasn't the only answer.  I assured him that I knew that, though I did appreciate the fact that he called to make sure I wasn't making a decision I didn't really want to make.  Here was(is) my thinking, though.  CF is hard on a body to begin with, and pregnancy is hard on a healthy woman's body, so put the two together and the results have a potential to be bad.  I couldn't stand the idea of having a child and knowing that there was a large possibility that that child would lose their mother at a young age.  I also couldn't stand the idea of leaving Jake to raise a child on his own.  Having it happen without the knowledge beforehand that it might is one thing, but to knowingly go into it with that knowledge...I just couldn't do it.

That surgery was hard on me, but I knew that going into it.  I knew that Jake could have had a vasectomy and it would have been much better for my health.  But there's further thinking into that too.  What if I did die soon into our marriage or after a few years?  I didn't want to take the option away from Jake to have children with the person he would fall in love with after I was gone.  I know they can be reversed, but that's not even a sure thing, so...I made the decision to take care of it myself.  If I had made any other decision about having children or how to prevent having children, they would have been selfish decisions and there is no way I could have done either one any other way.  Now, please don't get me wrong.  These were MY decisions and someone else making these decisions may make them a different way.  That doesn't make them wrong.  For me, though, any other decisions would have been wrong.

Even with all these very logical decisions, which were well thought out, the decisions and the surgery didn't take away a desire to have children.  I wish that they did.  It would certainly make things a lot easier.  There have been at least 2 times since we've been married that I thought I was pregnant despite the tubal.  I was thrilled and terrified both times...I'm sure very normal reactions.  Both times I would get so excited at the thought and then be crushed when it wasn't true.  I feel a little silly even telling people that, because, duh, right?...I had a tubal.  But there is always a small chance of getting pregnant after getting a tubal, and if you know anything about me, you know that I've pretty  much crushed every statistic and expectation my entire life...so it wasn't such a crazy thought.

So, when I knew Destiny was going into surgery to have her baby, there was this flood of emotions.  Thinking of what I may have missed out on because of my decisions, how hard it must be to not have a lot of support when you have a baby and have CF.  And then, Amanda, told me a few things that brought even more.  Destiny told Amanda that she had written a note to Dr. Hornick that she wanted given to him if anything were to happen to her during the C-section.  Basically, telling him how grateful she was for his care and support and everything he'd done for her while in his care.  It made me cry, knowing that this wonderful moment in a woman's life would have to be filled with worry and wonder over what would happen, and even expecting that something might.  I hated knowing she was thinking about that...but what else can you think when you're in our position?  Every flu, cold, sinus infection...everything that comes up can be the beginning of the end.  I've seen it happen, and heard numerous stories of how the smallest thing started the ball rolling.  What must she have been thinking about leaving her baby behind?  To not be there when he starts to walk and talk, and go shool, and get married.  I think, she must have been peaceful in a lot of ways, because Amanda said Destiny was comforting HER.  Thankfully, nothing did happen.  And even more than that, there are some serious miracles going on.  They had planned on her having the c-section on the 17th, but she was feeling so good that she said she wanted to wait 2 more weeks to give him more time.  (But she did NOT want him to be born on Halloween :-P)  He was born at 29 weeks and was breathing fully on his own!  No one was expecting that.  Destiny is doing well and I hope to hear more about her recovery from surgery while I'm here.

The good thing for me today, was that with all my doubting of the decisions I've made in my life, I feel like I got confirmation today that this one was the right one.  The reasons I had for not having children are the same worries Destiny must have had.  I'm very thankful that I won't have to have those worries.  Granted, God can still make another miracle happen in my life.  He can bypass a tubal, and I know that...He is so much bigger than that.  But I also know that I will never have to wonder if I made a mistake by not having one.  And I know that if I do become pregnant that it is not by some mistake I made (which I guarantee you I would think, because I constantly worry about who I hurt) but because God really wanted this for Jake and me.  I find a lot of peace in that.

As a side note, Destiny named her baby boy Brandon Douglas.  Douglas is after Dr. Douglas Hornick.  If there is any doubt what we think of our doctor and how amazing he is, there is some proof for ya.

A Better Day

I had another bad night, BUT I've actually had a pretty good day!  I made it through both sets of CPT today (the last two days I either didn't do one or couldn't do all the different positions of them), and I exercised.  I usually have a really hard time the first few days I go, but it went surprisingly well this time!  My Sats (Oxygen saturations) were good the whole time and I went 25 minutes!   PLUS, I got my A1c results back today...it was 7.2!!  That really cheered me up :)

My endocrine doc, Dr. Doelle (pronounced like Deli), came today too and even he had a smile on his face!  I don't think I've ever seen that from him...I've been a frustrating patient for quite sometime :-P  (He treats my diabetes and hypothyroidism)  He was happy that my numbers were better and also said my thyroid levels looked good.  I asked that the diabetes nurses and dietician come in so that I can get a refresher course on all things diabetic.  I'm finally at a place, mentally, where I'm receptive to the information...it only took 13 years :-D

I haven't seen Dr. Hornick yet today, so no info there.  All in all, things are looking up.  Now, if I could only get a good nights sleep!

So, somebody (*cough cough* STACI *cough cough* ;-P) thought I needed more pictures on here and not JUST on Facebook, so I took some pictures with my iPhone today.  Maybe you can get a little better idea of what my favorite "vacation home" looks like.

This is my side of the room.  I'm in a double right now because there are so many of us right now. We have to be by ourselves because we don't want to catch anybody else's bugs, so this time I get a really big room with TWO windows :)  There are 13 CFers right now (8 adults, 3 peds, I think).  That is a HUGE number at one time.  I guess the weather isn't helping any of us this time.

What I see when I lay in my bed.  That's the white board where my goals are written and the fabulous (HAHA!) TV.  Peds have it so good with their flat screen TVs and DVD players and...uh...no bitterness here :-P

The other side of the room.  Notice the fabulous faux wood sink cabinet and stunning bed clothes...just so stylish.  The bed is mussed because Jake slept in it on Saturday.  It's nice to have an extra bed he can sleep in instead of the chair or a cot that he brings with him.

My bathroom.  Very oddly shaped.  The mirror on the sink cabinet-thingy allows me to see the top of my head.  Quite handy.  Hence the hand mirror underneath it.

The view from my window.  This is by far THE best view I've ever had.  Usually I'm looking at a brick wall, so this is really really nice.  Anybody who comes in the room comments on the view, so you know it's special :)  They also comment on how cold I have the room.  I love a nice cool room.  It's set at about 67 right now...pretty much perfect.  Really nice when the rest of the hospital is about 72 or so.  The CF dietician came in today and said she'd come hang out in my nice cool room and check out the view when she gets stressed.  Sounded good to me :)

That's all for now!

Day 3

I had another bad night.  The coughing wasn't quite as frequent as the other night, but it kept me up longer.  I would just start to nod off and I'd start coughing again.  Frustrating is the only word that comes to mind.  Exhausted is what I am now.

I did take a nap this morning for about 2 hours, but then people kept coming in the room, so it didn't last nearly as long as I wanted it to.  Hopefully, tonight will be better.

I still haven't exercised yet.  The exhaustion leaves me with no energy and the thought of exerting that much more just makes me want another nap, so I skipped it again today.  I really want to get going with that, because it does speed up recovery.  If I get a good night of sleep tonight I'll finally get back into the normal routine, I expect.

Overall, I do think I'm starting to get better.  Jake said my voice sounded better when he called me over lunch.  I haven't coughed as much today so I think that's a good sign.  Although, I have gone through yet another box of tissues, for a total of 3 in 3 days.  That's probably at least a little tree I've killed by now :-P

We have new IV pumps this time.  None of the nurses or CFers like them.  They're like Fort Knox...impossible to get in to.  Normally, we all mess with our pumps, changing the speed the drug is infused at, or correcting the volume of the med.  Not to mention adding more time to it when it starts to beep and annoys us.  But not on these babies.  Nope.  You have to have an ID badge in order to get in them and pharmacy decided what speed the med goes in.  Most CFers are in quite often, so we know the routine, and know what our bodies can and can't handle.  We all change stuff, and the nurses know we know what we're doing, so they're okay with it.  Usually I run my Tob over half an hour, but the new machines think that because I'm little my body can't possibly handle the drug going in over a half hour, so I get to sit for twice as long.  It's pretty annoying.  The nurses hate them because they don't have the freedom to use their brains...pharmacy did that for them.  They set how much time the nurses have to start the med after they scan the med or enter it by hand before it starts to beep.  Apparently, they think nurses are also tazmanian devils, so they gave them about 10 seconds to get it done.

Here's the genius of someone who has been in the hospital a lot though.  Te he he.  Apparently, one of the CFers who is in right now, discovered a little button on the back of the machine that allows you to change things without the ID badge.  Our favorite physical therapy aid, Amanda, is passing the word around :-D  I haven't tried it yet, but I'm sure I will the next time the pump decides to mess with me.

I found out some more about the move.  Several of the nurses from this floor and even some of the housekeeping people are requesting to move with us.  I'm very excited about this.  Moving to a new floor is always hard, because you get really attached to the people you see every time.  (Not to mention that breaking in new people is always a process :-P)  So, some of our favorites want to go with us.  That should make the move even better, if their transfers are approved.  We've had favorite nurses, who got frustrated with the way this floor is run, go to different positions in the hospital.  I'm hoping they'll come back to us when we move.

We are a very interesting breed of people, as I've mentioned before.  I mean, if you think about it, we really are freaks of nature to begin with.  CF is not a common disease.  Jake and I did the math on what percentage of the American population actually have CF and it came out to be less then 1/100 of a percent.  Is that crazy or what?  Throw on top of that, only 10% of the CF population develop diabetes from the disease...how much of a freak of nature am I now?!  (By the way, I take "freak of nature" as a good thing...who wants to be like everybody else? :-) )

I suddenly drew a blank on what else to talk about so I guess I'll stop for now.  I'm sure I'm forgetting important information of some kind, but if I get some sleep I'll probably remember it tomorrow :)

Thanks for reading my ramblings!

Full Day Deux

Things got straightened out last night.  Turns out my day nurse didn't see the orders Dr. Hornick put in my chart.  Thankfully, my night nurse found them after I was confuzzled by some things and asked her about them.  So at about 11:00pm last night all the new orders were actually put into the computer system and everything is as it should be.  Gotta love technology.

I am now on 3 antibiotics.  I did get put on the good one, so YEAH!!  It's called Aztreonam...I've been practicing saying it all day and it hasn't gotten any better.  This one isn't sticking in my head for some reason.  Oh well.  The other one is Cipro, which I'm on quite a bit too.  Usually, it's in pill form, but doc decided to do IV this time.  So, my current med schedule is: 8am: Aztreonam, 10am: Tob and Cipro, 4pm: Aztreonam, 10pm: Tob and Cipro, and 12am: Aztreonam.

We did levels today for Tob.  I am pretty sure this is the first time getting blood 3 times only took 3 sticks.  I don't know how that happened.  Although, my nurses did listen to me when I told them where to stick it (LOL! the needle that is...).  The 2 nurses who did them were really good, so I give them the credit. 

I really only have 3 veins that can actually be poked successfully with some consistency.  2 in my left hand and one on the back of my right arm.  That one is particularly awkward, but it works so, we do what we have to.  One of the veins on my left hand gets pretty sore after getting stuck.  It's right over the bone of my thumb below the knuckle...but again, it works, so we do what we have to do.  Those results I probably won't get unless they're high...kind of a no news is good news thing.  I also realized I made a mistake in my last blog.  The troughs I get twice a week after today.  Always on Mondays and Thursdays, unless Dr. Hornick gets a hunch.  And, he's always right when he gets his hunches :)  So, my veins get a break until Thursday.

As far as how I'm feeling...

Last night and this morning were particularly rough.  I tried going to sleep at about 11:30 and coughed until 2am.  When I woke up this morning it happened all over again.  From 8am until around 10:30 all I did was cough.  Coughing always has some pain with it.  You can't cough that much and not have pain.  I start getting headaches from the pressure and my abs start to burn.  More than anything, though, it just breaks me emotionally.  This feeling of "it's never going to end" start flooding my mind and I can't help but cry.  I know I'm an emotional person to begin with, but I hate this kind of crying.  It's tears of desperation.  I'm pleading with God to make it stop after about an hour.  Eventually, I remember (it has to be the praying that makes my brain work again) that cold water or ice works.  I start sucking on ice and sipping the water and things start to calm down.  Then I fall over from exhaustion and usually just go to sleep, if my body will let me.  I long for those periods to not come.  I do everything I can to avoid them.  Sometimes, that's just not possible.

I'm extremely congested both in my sinuses and my lungs.  A few people have commented that I sound particularly bad this time.  I'm coughing up a ton of mucus and have already gone through 2 boxes of tissues since I've been here.  By day 2 I'm usually feeling better and coughing less, so I'm having a rough time, mentally.  Sometimes it's too much to handle.  I just want to feel better, even a little bit.

Dr. Hornick wrote, on the white board in the room, what my goals are for this time.  Number 1 is decrease in cough/sinus congestion.  Number 2 is decrease in dyspnea.  This was a new word for me, so I had to look it up.  It just means difficult or labored respiration.  The white boards are a new thing, so actually seeing the goals are too.  I like it :)  Number 3 is "BS Control".  I laughed when he wrote that down.  I thought he was talking about something else, but he quickly told me that he meant blood sugar control.  The other way would work too, though. :)  Apparently, at least one of my meds is made with some sugar solution, so he changed that in my chart so they would make it with saline instead.  I had a spike in my blood sugars this morning which really confused me, so finding that out relieved that concern.  The rest of the day has been better as far as those go.  I forgot to ask about my A1c result, so I'm going to try to remember that for tomorrow.  The A1c is the test they use to find out what your average blood sugar has been for the last 3 months.  They like it below 7.0 and as close to 6.0 as possible.  Mine usually runs around 8.0.  It's gotten a lot better over the years as I've learned to take better care of my diabetes.  My goal for this one is at least 7.8.  My last one was 7.9 so I want to see improvement!

Moving on, number 4 is "smile daily".  I kinda liked that one.  I don't really think I have a problem with that, and he knows it.  I think that's why he put it up there.  There was also originally a number 5, which I find hilarious.  It was "Be Normal".  As in, Normal, IL.  He doesn't miss any opportunity to throw that around.  A couple of years ago, he realized what town I was from and hasn't stopped joking about it since.  I love that he has that dry sense of humor.  It reminds me of my dad, so it's kinda comforting :)  He quickly erased it after he wrote it.  I laughed, but maybe he didn't think others would get the joke.  Besides the fact that no matter what, I will never be "normal", so that is an impossible goal :-D

My voice hasn't really gotten any better.  All the coughing last night and this morning made it worse so there is almost no voice left.  That makes ordering my food fun :)

So now the good news.  I found out that the adult CFers will be moving to a new floor at the beginning of next year.  Dr. Hornick has been lobbying for a long time for us to get our own area.  Being around sick, contagious people is NOT good for us at all.  This will be at least the 3rd time we've been moved since they stopped putting us in peds.  I have high hopes for this.  They've been renovating the floor for awhile, so it will be brand spankin' new when we get there.  I know that Dr. Hornick wants us to have a lot, but I'm not sure what will actually happen.  The new area will be next to the IPCU (Intermediate Pulmonary Care Unit) which has really big rooms...so I'm crossing my fingers for that.  Also, he's wanted us to have (and we've all wanted) what all the peds kids have.  Flat screen TVs, cordless phones, video games, DVD players, refrigerators...the works basically.  When you're in as much and as long as we are, these things are really awesome.  It makes being here not quite as horrible.  I'm not sure what the board will be willing to pay for and what will be donated.  When my friend, Lori, died last year her husband donated 7 dorm refrigerators and a Wii for use ONLY by CFers in her memory.  We have to eat so much to keep our weight on and everybody I know brings food with them, so those fridges are great.  I always have soda in mine.  Mmmmm...Mountain Dew. :)  These kind of luxuries are really special and I'm hoping that someone will see fit to get them for us.  Children's Miracle Network outfitted peds, so they may do it for us too.  We're a special breed of adult, so we may still qualify as children :-P

Alright, so I've written a whole heck of a lot, so I'm gonna quit now.  It's kinda nice getting this stuff out...should have started this a long time ago.  (No "told you so"'s from anybody, got it? ;-) )

Back in Iowa

Jake brought me up to the hospital last night.  I have been sick for the last few days with a bad sinus infection that wasn't getting better, so here I am.  I had a bad cold for about 10 days at the beginning of September, and after Aunt Barb's death, there was a lot of stress.  The sinus thing popped up, and there ya go.  Sick, sick, sick.

I'm not feeling too well, as you can imagine.  I'm extremely tired and am still coughing quite a bit.  I've also been nauseous on and off since Friday night.  To add to everything else, I started that very special time of month, and the cramps are always enough to knock me down for 2 days without all the other stuff going on.  Being on the antibiotics means no ibuprofen, so Weeee!, even more fun.  I requested tylenol w/ codeine, so we'll see if my doc okays that.  The tylenol by itself does absolutely nothing for me.

Dr. Hornick had been out of town so I had another doc admit me.  Thankfully, Hornick was back this morning and I feel much more comfortable now.  He is THE best doctor.  I truly trust him with my life and that means a lot when you're in a position like the one I'm in.  He cares very deeply for every one of his patients and that is really obvious.  He knows his stuff, is incredibly humble, forceful when he needs to be, and has a great bedside manner...what else could a patient ask for?

So far I'm only on Tobramycin (Tob from here on in), which I'm on every time I'm here.  I think we must be waiting to get test results back or something because nothing else was prescribed, which is unusual.  I didn't get a lot of time to talk to Hornick when he came in this morning because I was getting CPT (Chest Physio Therapy) at the time.  I'm sure I'll be able to ask more questions tomorrow.  I'm not really worried about it though.

I guess for the time being I'm just resting, eating, and doing nebs.  Tomorrow will start all the fun stuff (completely sarcastic).  I'll get stuck for Tob levels tomorrow morning.  That checks the level of the drug in my blood 1, 2, and 3 hours after it is administered.  They do this after the 3rd dose the first time, and then I just get troughs once a week (or when Dr. Hornick gets a hunch :-P) after that.  The troughs are much nicer because I only have to get stuck once right before they infuse the drug.  They check that to protect my kidneys.  Too much drug and my kidneys can shut down, too little and I won't get the benefits.

I'll also, most likely, start exercise tomorrow (which I loathe).  I say most likely, because right now I don't feel up to it, but I may feel better after another nights sleep.  Also, depending on the second med chosen I may be nauseous by the time exercise time rolls around.  One of the drugs I'm still sensitive to is Meropenem.  Unfortunately, it makes things worse for the first few days...nausea, fever...fun stuff.  I'm hoping for the drug we did 2 admissions ago.  They'd never used it on me and I didn't have ANY side effects and I didn't have to get stuck to be on it.  Beautiful!  At the time they said they'd do every other visit would be Meropenem and every other one would be the new one (can't remember the name at the moment).  We'll see what Hornick's decision on that is.  I don't usually fight him on stuff.  I trust him enough to not fight unless I absolutely can't handle something.  That doesn't happen too often.

My dinner got here about 5 minutes ago, so I'm gonna quit for now.  Maybe I'll have more info to share tomorrow.

Weary and Feeling Small

I've been feeling really down lately.  Yesterday was especially bad.  I had a low-grade fever and was really tired, so that may explain some of it, but still.  I've been very lonely lately.  Jake is working all the time and for the next couple of months it will get even worse.  I've just felt very alone.  I suddenly feel like I'm 10 again and think "I don't have any friends" and cry.  It's a horrible feeling.  I do have friends and they care about me, but I don't see them very much.  It seems that everybody has their thing(s) to do and I don't fit in to those plans.  It's kids, or work, or errands, or something...always gets in the way.  I spend the days and most of the evenings by myself.  I want to talk to people, to be with people, but something always seems to get in the way.  Either I'm not feeling up to going out or I don't feel that I should call people.  I always think I'll be interrupting them, or inconveniencing them.  I often feel like I'm a burden.

I try hard not to complain about things.  I feel like if I start I'll never stop so I try hard not to ever start.  But the truth is things are really difficult for me.  I have a hard time getting moving most days.  I want to do the laundry, clean the bathroom, clean up the family room...but I'm so tired and the thought of doing something I know will make me cough and exhaust me is just too much most days.  I need help but don't want to ask anyone for it.  Everyone else has the same tasks to do and usually a heck of a lot more.  They have small children to take care of, and jobs to do, and their own homes to tend to.  Nobody has time to take care of their families and mine too.  I need to do it, but just can't find the energy to.   So, things go undone until they absolutely have to be done.  Like when unexpected company is coming in half an hour and I have to fly to get everything cleaned up, all the time not breathing well, and coughing and then collapse when it's finished...usually then putting on the oxygen I should have had on the whole time.

I just feel very alone and don't know what to do about it.  I know the answer lies with Jesus, but I even feel distant from him.  My own doing, I know...he doesn't leave.  But that starts a whole different topic, so I won't get into that right now.  

Until later...